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Day +15: Light and love

I’m updating to let you know that there’s not much of an update. The doctors think Ramón’s airway closed due to an infection just above his voice box, combined with throat inflammation caused by the radiation he received before transplant (a common side effect). Because his immune system was intentionally wiped out for transplant, the swelling can’t resolve until his white blood cells start regenerating. And, without addressing the swelling, the doctors don’t feel comfortable removing the ventilator and therefore can’t turn down the sedation much more. This is about the time the doctors expect to see Ramón’s counts coming up, so do your white blood cell dance for encouragement.

We also know that, during any cardiac arrest, the brain often goes without its full supply of oxygen for a time. The neurologist says it’s too early to hypothesize what this might mean for Ramón specifically since he’s still sedated. Though they can do some basic imaging while under sedation, there’s not much value in speculating until Ramón is awake. So, again, do another round of the white blood cell dance because that’s ultimately what’s causing the wait.

I’ve been able to Facetime with him at least once a day since Tuesday, and sometimes he’s been more alert than others, depending on the level of sedation. I played one of our favorite songs for him, and his eyes opened wide. When we Facetimed yesterday, Ramón was under additional sedation for an EEG. He was pretty much asleep the entire call, but I played him some music and, like clockwork, a person walked by the house, which caused our little dog, Benny, to howl like crazy. The doctor called later to tell me that Ramón’s EEG went a little wild during Benny’s howling. The doctor was chuckling, too, because the EEG also spiked when I told Ramón he’s asleep half the time I’m talking to him anyway.

Tomorrow’s my birthday, and it obviously doesn’t feel like a very celebratory time. As I was looking back at photos, I found this one from my birthday in 2013. I love it because, though the photo is dark, the light draws your focus. Although it’s a bit of a dark time, I’m doing my best to live in the light. For my birthday, it would mean a lot to me if you’d light a candle for Ramón and spend some time sending healing energy his way. And, if you feel inspired, I’m still doing my usual birthday thing: http://fightcf.cff.org/goto/drew. I constantly remind Ramón how many people are in his corner, so keep rooting.

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Drew, your updates are incredibly touching and powerful. I feel your journey and the emotions as I read it sad, worried, hopeful, and even amused (the dog sticker was quite cute). Most of all, I find myself grateful to have the ability to share your story and ask others to share your story so we can work toward funding the next clinical trial while you stay exactly where you are needed - telling Ramon that we are lifting him up and lighting his way back to you. Happy birthday.